Black Lives Matter—a few words from this white woman/writer/mother on Monday, July 11, 2016

I have not gotten much sleep this past week. In the wake of the murders of Philando Castile and Alton Sterling I have been staying up late scrolling through headlines, Facebook posts, news articles, opinion pieces. Searching. Searching for something. Searching for meaning, understanding. Searching. Searching for humanity.

I haven’t been able to find words. But I have a burning in my throat—a need to speak. Silence is not an option.

I am a person who identifies as white, and I am a writer, a wordsmith. Because of these two realities, I find writing about race to be challenging. I am afraid of getting it wrong. Sounding too privileged or ignorant, choosing the wrong grouping of words and offending people of color with my word choice.

But an honest try that falls short is better, far far better, than not trying. Than silence. Silence is deadly. Silence is keeping racism alive. So kindly read along as I may fumble (I’m sorry if I do…).

This past week two black men were murdered by police officers in the United States. Alton Sterling, who was selling CDs in his usual spot in a parking lot outside a small market, was pinned to the ground by two officers and then shot to death. Philando Castile was stopped for a broken tail light, was asked for his license and registration, and was shot to death as he reached for his license.

I know that this is not new. African Americans have been being racially profiled by and killed by police officers for a long time. What is new are cell phone videos and social media. It’s becoming harder for the racism being perpetrated by these officers who are committing these inexcusable offenses to be hidden, to be swept under the rug.

I have not read a single detail that indicates that either of these men were doing anything illegal, or even suspicious. Nothing that would warrant either of them being shot at. But let’s consider the shooting part for a moment. What happened to the idea of shooting a “suspect” in the leg? To disarm or incapacitate, not to kill. How have we arrived at shooting at close range until dead?

Yesterday my family went with my sister’s family to the Renaissance Festival, just over an hour away. Our mini van filled with our white family followed their mini van filled with their white family, from one suburb through another, onto rural roads until we reached our destination. We noticed right away that one of their tail lights was out. This was nothing to be concerned about—it can be fixed at their convenience sometime in the coming weeks. Yet as we followed them for an hour I stared at that missing light and felt sick—knowing that if we were a black family, this could be cause to be killed.

KILLED. For having a broken tail light.

This is the Oscar-Go blog where I write—just every once in a great while these days—updates about how our boy Oscar is doing, what he is up to, disability issues that arise—a way to keep family, friends, and acquaintances informed of our life living with our sweet guy who happens to be disabled, a way to raise awareness about SMA and disability. So why am I writing about Alton Sterling and Philando Castile?

That’s why. And because this is the country we live in. This is the country my child is growing up in. A country where police officers are shooting and killing black men, and have been getting away with it. This is not a black problem. This is an American problem, and it affects the way I raise my child.

I am certain I have said or done things that are racist. Not because I meant to. Not because I believe in or stand behind racism in any way. But simply because I am white. I was raised by two socially conscious parents who have spent much of their lives fighting for justice, including racial justice, in many ways. Yet I am white. I am a product of the culture. My white privilege is a reality. A reality I am trying very hard to be much more aware of.

This piece by George Yancy, that was in the New York Times in December, has had a powerful impact on me.

He begins like this:

Dear White America,

I have a weighty request. As you read this letter, I want you to listen with love, a sort of love that demands that you look at parts of yourself that might cause pain and terror, as James Baldwin would say. Did you hear that? You may have missed it. I repeat: I want you to listen with love. Well, at least try.

You can read the whole thing here:

It’s not necessarily an easy or comfortable read, but racism sure isn’t easy or comfortable, is it?

I also highly recommend Ta-Nehisi Coate’s book, Between the World and Me which reads as a letter to his son about being black in America.

These two pieces of writing have recently expanded my vision and given me deeper perspective on racism in America today and my own white privilege.

So where do we go from here? What do we do now? What can we do? We speak. Clearly and directly about the racism we see. We educate with as much love and generosity as we can bear. We LISTEN. To what others have to say. To the way we use language. To the way others use language. We listen when others tell us our actions or words are harmful. We open our hearts.

What else? Please tell me what else can I do.

A Snowy Miracle on Wednesday, February 17, 2016

A small miracle happened today. We had a massive snow storm—about 18 inches in fewer than 18 hours. It fell fast enough to close down most of Rochester—which is no small feat. And when the town snow plow came by, it left NO SNOW in our driveway. That’s right. NONE.

Look! No snow dumped in our driveway!

We happened to be outside when the plow came by. The plow driver slowed to a stop, rolled her window down and said, “I’ve heard about your situation. We’re going to try something different today.”

Here’s what she did. About 20 feet before our driveway, she raised the plow off the ground, which caused all of the snow the plow was pushing to fall into the street. She then lowered the plow again as she reached our driveway, continuing to plow. She then turned around to plow the other side of the street, and when she reached the area where she had let the snow fall into the street, she drove into that side of the street and pushed the snow into our yard. Then backed up the 20 feet and continued on her way.

So a pile of snow sat in the road, on one side of the road, for about three minutes until she got to her turn-around point and came back. The maneuver of pushing the snow into our yard and then reversing to continue the usual route took about 30 extra seconds than the usual method of plowing.

30 SECONDS. Yep. For five years we have been told that there is nothing that could be done. This woman solved the problem in 30 seconds. And she was friendly, and kind—and she had been up since 2:00 am! She performed this maneuver at around 11:00 am, and again around 3:30 in the afternoon.

I will still meet with the town supervisor so we can firm up a long term plan. But it seems to me this amazing woman showed us today just what the long term plan could be. Thank you plow #56 driver!

David, Oscar, and I are truly grateful for the outpouring of support that arose from the initial blog post regarding the snow plow issue. I really had written the post to vent, in order to be able to fall asleep that night. The ensuing ideas and offers of help were amazing. We shouldn’t need an army of support to deal with accessibility issues, but we are deeply grateful we have one. Thank you for helping make accessibility a priority—for all people, not just for Oscar!

Oscar prepared for sledding this afternoon!

Oscar and David cruising through our yard!

Town Snow Plow, Meet Dragon Mama on Saturday, February 13, 2016

We live on a corner. Not a sharp city corner with curbs, but a soft suburban corner. When the snow plow comes though our neighborhood, it comes around the corner, picking up loads of snow as it goes and by the time it gets to our driveway, it dumps an inordinate amount of snow at the foot of our driveway.

What is inordinate, you might ask. Well, just about every time the snow plow goes past our house, we have a minimum of a foot of snow at the base of our driveway, whether we’ve had 8 inches of snow, or 3. There was the time we had a big snow fall one day. So big that the plow needed to come back the next day to really clean up the roads. On this second day, absolutely no snow had fallen. Yet we had a bank 18 inches deep blocking our driveway. And I don’t mean that there is a foot or more of snow at the base of our driveway that starts at the street and goes back into our driveway a foot or two. The snow that the plow dumps is usually six to eight feet wide from the street into our driveway. Sure it tapers off slowly, but the plow is dumping massive amounts of snow into our driveway.

This year we’ve hardly had any snow. The plow has only buried us in twice so far—twice in the same day, mind you. It had begun snowing overnight and snowed a good bit, 4-6 inches, probably. That morning it probably took David only 35 to 40 minutes to shovel us out. We have a double wide driveway, so just clearing the driveway takes a bit. On that morning, because the snow was so light—the kind that just lifts off the ground and floats into the air if you gently poke it with the shovel—what had fallen into the driveway was easy to move, and probably took no more than 20 minutes to clear. But still, what the town had dumped, took another 20 easily. It continued to snow throughout the day. By the time I arrived home at three that afternoon to meet Oscar’s bus, there was another three inches that had fallen. No big deal. Except I couldn’t pull our van into the driveway because there was another foot of snow dumped by the town. I pulled into the neighbor’s driveway and made my way to our shovel. It took me about 15 minutes to clear enough of a path to pull our van in. Then I set to work on the rest of the foot of the driveway so that when Oscar’s bus arrived he’d be able to access our house. His chair can handle three inches of snow. As can our van, which is quite low to the ground, because of the accessibility modification. Neither can even think about handling a foot of snow. Had I not arrived home a bit early that day, Oscar would have been stuck in the street, completely unable to access his own home.

Each time I am surprised by the volume of snow dumped into our driveway. And each time I look closely at our neighbors’ driveways, in case I have forgotten that this is just how it works, and everyone has this much snow. Nope. Never. We consistently have snow that is at least two to three times as deep as what is in our neighbors’ driveways. And the volume of snow—the cubic feet that have been dumped—is easily a minimum of four to six times as much as any of our neighbors.

Over the years, we have called to complain. We might get the dispatcher on the phone, telling us there is nothing he can do. Telling us that this is Rochester, this is winter, we should be used to it. Once I was even asked if I had called my snow plow guy. My snow plow guy?! You mean my husband and the shovel sitting just outside our front door? David and I have each taken turns trying to calmly explain our situation—young child, wheelchair, low-to-the-ground accessible vehicle, inordinate amounts of snow. We have each taken our turn coming to a boil and eventually yelling on the phone when we weren’t listened to. And a couple of times we have even managed to get the town to bring a small truck out to clear the mess they have left at the foot of our driveway. But the two or three times they have ever done this, it has been begrudgingly, and with warning that it would probably not happen again.

So last year, toward the end of the season, when we’d had enough after a winter of heavy snowfall, I took a different tactic. I called the town, not in the midst of a crisis, and found a higher-up in the highway department to talk with. I scheduled a meeting. I brought photographs of the end of our driveway, and the end of a neighbor’s driveway, taken at the same time, after the plow had been by. He mostly listened to my case, sometimes talked over me, and then basically told me he was sympathetic to my situation but that there was really nothing he could do. He could ask his drivers to pay attention as they pass our property, but because we live on a corner, there isn’t much that could change. It is the town’s job to clear the public roads, not private property. He said I could email him if I had any further questions or concerns during the snowy season. I felt wholly unsatisfied. But I left it at that as the season was almost to a close and the winter had exhausted me.

This year, when we had our first snow fall, I spoke with Oscar’s school psychologist who is a wonderful ally and advocate for all kids, and has especially been so for Oscar and our family. He has gone to bat for us with school transportation issues we’ve had in the past. Maybe we could come at this from the angle of the town creating a barricade for school transportation. He suggested I start by calling the town supervisor’s office directly. So I left a message. And didn’t hear anything back. So I tried again. Eventually I got the assistant to the supervisor on the phone. She listened and said she’d have the _______ (name of position within the town) get back to me right away. After I hung up the phone I realized the name of the position she mentioned was actually the person I had had the face-to-face meeting with the previous winter. I called back and said no thank you. Said that he had told me he could do nothing for me. It’s time to take this to the next level. She said someone from the supervisor’s office would contact me. Radio silence for a couple of weeks.

This morning I called again, and left another message. This afternoon I received a message back, from the same person I had had the meeting with last year. He said he was eager to talk with me, as he had spoken with someone at the Center for Disability Rights, and had new information to share with me. I knew what this meant. I could hear it in the tone of his voice, in the words he chose to use in the message. He was going to prove to me he didn’t have to help me. To help us, our family, our child who uses a wheelchair and who is being denied access to his own home by the amount of snow the town dumps in our driveway. Sure enough. When I called back he let me know he’d had a lengthy conversation with someone at the Center for Disability Rights and that after relaying the situation to her, she did agree that it was not within the town’s jurisdiction to take care of personal property. There was just the slightest hint of pride in his voice. That he was right. He said he was not unsympathetic. But in fact his message was exactly that. There was nothing he could do and he was not legally obligated to do anything. Never mind that a resident of the town for which he works has a problem that needs help from the town to solve said problem. Never mind that his own department in the town is creating a barrier for a child in a wheelchair to access his own home, or access his school bus. Nope. There is a problem and he is not legally obligated to help solve that problem.

Now I can only imagine what story he told the Center for Disability Rights. Because one solution they discussed together was having someone who could ride the bus with Oscar who could help him access the school bus in the morning or his home at the end of the day. Hmmm…so the school district (linked financially to the town) would pay someone who could step off the bus and spend a bare minimum of 20 minutes, but probably more like 30—while the bus full of children waits—clearing the snow the town dumped in our driveway. There just happens to be a shoveler for hire who can hop on that bus any day there is snow. And the entire bus schedule—which is already very tight because of the one wheelchair accessible bus in the district—can be rearranged by 20-30 minutes so our driveway can be shoveled. But the town which has trucks with which to clear snow can’t spend three minutes cleaning up the mess they made. He gave me the name and number of the person he talked with. I suspect that when she hears our side of the story she will have a different view of the situation.

What if we were talking about this man’s daughter? Or father? Or himself? Would he simply say, “This does not fall within the town’s jurisdiction,” with a certain amount of pride? Or would he make sure that particular resident did not have barriers to access his or her home? I have wondered if meeting Oscar would make a difference. Putting a face to the story. But more than that. Oscar is charming. Oscar is a good negotiator. Oscar wins people over. But I am not looking for an exception for my son. I am looking for equal access for all people with disabilities.

I do understand that of course it does not fall within the town’s jurisdiction to take care of personal property. It may even be that the town is not legally obligated to clean up their messes. Nor is the higher-up in the town I have spoken with legally obligated to be sympathetic. But I am not legally obligated to back down. And I will not until we have come to a solution that is reasonable. A solution that takes into account basic accessibility needs of a person using a wheelchair.

Heading into 2016 on Wednesday, December 30, 2015

Dear family and friends,

2016 is nearly upon us. I am finally finding a quiet moment to to reflect back upon 2015. This was a milestone year for Oscar in many ways. There were many firsts, many growing-up moments.

As many of you know Oscar went to MDA camp for the first time this summer. Five days, five nights away from his parents. And he had a blast! He stayed in a cabin with other boys ages 6-9. He had a chance to participate in many fun camp activities like Nature Club where he got to hike in the woods, observe animals, and make projects out of natural objects. He also got to swim, do arts and crafts, participate in music and drama, hang out in a wheelchair accessible tree house, and zip-line in the woods!

For those who aren’t familiar, MDA camp is run by the Muscular Dystrophy Association in many locations across the country. It is for children ages 6-17 affected by any neuromuscular condition  that falls under the umbrella of the MDA. Each camper (as needed) has their own personal counselor to tend to their needs. We weren’t sure we were going to send our then six-year old to sleep away camp! But last year when we visited Oscar’s neurologist at Johns Hopkins he said, “Next year when Oscar is six he will go to MDA camp.” And we all hesitated. He then went on to explain the importance of attending MDA camp from the beginning: It is important for children to learn to rely on others for their daily needs (lifting and transfers, toileting, bathing, dressing, respiratory therapies, and much more). It is also important that kids with limited mobility have the chance to be around others like them, to be the rule instead of being the exception. His thoughtful explanation along with the countless tales we have heard over the years at the SMA conference from past MDA campers about those weeks being some of the most important of their lives convinced us that we all had to prepare to be away from one another for five days.

Oscar was extremely lucky to be paired with a counselor we had met the year before when we visited camp—and who Oscar had really hit it off with during that visit. She came to our house several times before the start of camp so she and Oscar could get to know each other better and she could learn the intricacies of his daily care needs. She happened to be a physical therapy student finishing up her doctorate—which gave us an extra level of confidence, and just by incredible chance she was scheduled to be the student shadowing Oscar’s physical therapist this past fall! We also feel so lucky that our local MDA camp is just 25 minutes from our house. We’re not sure how we would have handled it if our boy had been further away! As it were, we tossed and turned and stared at the ceiling the first night he was away. But we did make a point of going out to dinner several times and we enjoyed our time together as well.

This fall also brought many milestones to our family. At Oscar’s seven-year check-up in October we learned that he had grown three inches in a year and gained eight pounds in four months! With his sudden growth spurt we decided that he was finally ready to stay in his power chair while riding in the van, versus transferring to a car seat. This has been an exciting shift for Oscar and has also simplified things for us by reducing the number of lifts we have to do of this growing boy! Oscar also lost his first tooth this fall, and has a second wiggly one. He did not want to part with his first tooth so he wrote a very courteous letter to the tooth fairy asking if she would be willing to leave his tooth for him but still leave a treasure. And she complied! Oscar continues to participate in aqua therapy twice a week and he just loves being in the pool. This fall he worked his way up to putting his whole face in the water, and then eventually swimming underwater with no flotation device (usually he wears a neck ring floaty). He is so proud of his accomplishments and he continues to gain strength, flexibility, and bravery as he explores different ways of being in the water.

Oscar also started using biPAP (bi-level positive airway pressure—much like the CPAP people use for sleep apnea) at night this fall. This will help his breathing overnight stay more steady, and less shallow, and hopefully reduce the number of times he wakes at night! It can also serve to increase his lung capacity and improve overall respiratory function. So far it does seem to have had a positive impact on his sleep, though we are still working with the sleep center on adjusting the pressures to the optimum settings. Like with the introduction of any new medical equipment, we were both grateful that it exists and is available to us, and also feeling some trepidation about the introduction of a new intervention. Overall the transition has been pretty seamless, though, for all of us.

We had some traveling adventures this year as well. At the last minute we decided we needed to do something fun during spring break so we went overnight to Niagara Falls and stayed in a room overlooking the falls. In June we went to the SMA conference in Kansas City. As usual it was a delight to catch up with families we’ve met over the years, as well as meet new families. In August we made another last minute trip to Storm King Arts Center in the Hudson Valley. Oscar had really become enamored with the artist Andy Goldsworthy after watching a documentary on him so we thought it would be great to see one of his pieces in person, along with all the other massive and inspiring sculptures at Storm King. Indeed, it was a great hit! Also in August Oscar and David spent a weekend at Keuka Lake with friends and in September the three of us spent a long weekend at another peaceful spot along Keuka. In November we had another amazing weekend with aunt Linda and other favorite relatives in Baltimore, as well as our annual visit to the SMA specialist at Johns Hopkins. This was the first visit in which the doctor made no new recommendations at this time, which was a relief to us.

At Storm King with the sculpture Oscar calls "Red Beauty"

Storm King: Oscar with Andy Goldsworthy's Wall

David and I each made solo trips to Philadelphia this year, as well. David went for four days in the spring to have a much needed break from the day-to-day to visit my cousin and some old friends. This fall when we went to Baltimore the fellas drove home without me and I stayed an extra day in Baltimore with my aunt then took the train to Philly to have time with my cousin and to attend the National Guild for Community Arts Education conference, a very inspiring professional development experience for me.

Oscar continues to be very social guy, soaking up every moment he gets to spend with friends, all the while keeping a very busy after school schedule: aqua therapy, music therapy, massage therapy, and regular “land” PT. He enjoys school so much. He regularly answers that “everything” is his favorite and that there is nothing he doesn’t like about school! He continues to love to draw, and he has taken quite the interest in science—chemistry in particular—and quite specifically the periodic table of elements! Reading independently really set in toward the end of first grade in June, and since then he has been devouring chapter books alone, which is so exciting. We really miss reading to him, but just recently it seems he is willing again to let us read to him some of the time!

David and I each try to find time to do things we need and love: reading, writing, playing music (David), being creative in general, getting outside, walking (me), running (David), as well as finding time for ourselves as a couple. Overall we’re doing quite well.

SMA continues to pose challenges to all three of us, but we continue to find new ways to embrace these challenges, and to live life fully with open hearts. We often read or hear of people “fighting _______ (insert any number of conditions)” or “suffering from_______.” We find we do not approach our days this way, fighting or suffering. Yes, there are situations in which we advocate for better accessibility for Oscar, or work hard on Oscar’s regimen of activities for his respiratory and physical health, or research clinical care for SMA and try to educate our local health care providers on best practices for SMA. There are days we are tired, or sad, or mad, in which these feelings are somehow connected to the presence of SMA in our lives. But we continue to be filled with gratitude for all we have learned, all those we have met, the way our eyes and minds and have been opened—all because of SMA.

And of course, most of all, we are grateful for our boy Oscar, his bright smile, his thoughtfulness, his sense of humor, his creativity, and his endless curiosity about the wide world.

Wishing you and yours deep joys, unexpected delights, and good company in 2016.

Thanks for being part of our community.

Sally, David, & Oscar

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